Decision-making about complementary and alternative medicine by cancer patients: integrative literature review.

BACKGROUND
Patients with cancer consistently report conflict and anxiety when making decisions about complementary and alternative medicine (CAM) treatment. To design evidence-informed decision-support strategies, a better understanding is needed of how the decision-making process unfolds for these patients during their experience with cancer. We undertook this study to review the research literature regarding CAM-related decision-making by patients with cancer within the context of treatment, survivorship, and palliation. We also aimed to summarize emergent concepts within a preliminary conceptual framework.


METHODS
We conducted an integrative literature review, searching 12 electronic databases for articles published in English that described studies of the process, context, or outcomes of CAM-related decision-making. We summarized descriptive data using frequencies and used a descriptive constant comparative method to analyze statements about original qualitative results, with the goal of identifying distinct concepts pertaining to CAM-related decision-making by patients with cancer and the relationships among these concepts.


RESULTS
Of 425 articles initially identified, 35 met our inclusion criteria. Seven unique concepts related to CAM and cancer decision-making emerged: decision-making phases, information-seeking and evaluation, decision-making roles, beliefs, contextual factors, decision-making outcomes, and the relationship between CAM and conventional medical decision-making. CAM decision-making begins with the diagnosis of cancer and encompasses 3 distinct phases (early, mid, and late), each marked by unique aims for CAM treatment and distinct patterns of information-seeking and evaluation. Phase transitions correspond to changes in health status or other milestones within the cancer trajectory. An emergent conceptual framework illustrating relationships among the 7 central concepts is presented.


INTERPRETATION
CAM-related decision-making by patients with cancer occurs as a nonlinear, complex, dynamic process. The conceptual framework presented here identifies influential factors within that process, as well as patients' unique needs during different phases. The framework can guide the development and evaluation of theory-based decision-support programs that are responsive to patients' beliefs and preferences.

as systematic reviews, but their scope is broader. The intent is to synthesize a broad range of literature on an emerging topic with the goal of developing an initial or preliminary model or framework. 24 Through this review, we intended to propose a more comprehensive, holistic understanding of CAM and cancer decision-making than has been possible through any primary research study.
Our search strategy was developed with the assistance of a health librarian and included both subject headings and keywords related to cancer, decision-making, and CAM or integrative medicine (online Appendix A). We searched the following electronic databases through September 2011: Academic OneFile, Alt HealthWatch, Allied and Complementary Medicine Database, CINAHL, EBSCO, Embase, MEDLINE, OmniFile, PsycINFO, PubMed, SocINDEX, and Sociological Abstracts. We included articles that described either or both of (1) the process or context of CAM decision-making relevant to cancer treatment, survivorship, or palliation; and (2) the outcomes of the decision-making process. We defined a "process" as a series of actions, changes, or reactions that happen over time as an individual contemplates CAM treatment options. We defined "context" as the set of circumstances within which decision-making takes place. We defined "outcomes" as the results of the decision-making process (and not of the cancer). Pertinent articles were included whether CAM decision-making was considered as a separate issue or as an issue alongside conventional medical decision-making. We excluded articles that described decision-making related to cancer prevention and those that focused exclusively on CAM use or the context of CAM use, although (as stated above) we included articles that described the context of CAM decision-making. All of the authors participated in the screening process, with various pairs of authors independently screening each article title and abstract for eligibility. For articles where it was difficult to determine eligibility on the basis of title and abstract alone, the full text of the article was retrieved and examined before eligibility was determined. Screening decisions were recorded in an Excel database and were compared by one reviewer (L.W.) for consistency. Discrepancies were discussed and resolved during a team teleconference during which all reviewers had access to all abstracts and/or full-text articles as required. Once a preliminary list of included articles had been developed, we reviewed the reference list of each article for other potentially eligible articles missed in the initial search.
Although CAM use has become common within cancer care, it remains controversial. Many CAM practices originate within philosophical traditions that deviate from Western medicine, leading some individuals to view them skeptically. 9 Furthermore, the body of research evidence for most CAM therapies tends to be smaller and often of lower quality than the evidence for conventional medical therapies. 10,11 Existing CAM research evidence is also often difficult to find, synthesize, and share with appropriate knowledge users. 12,13 Finally, the potential for interactions with conventional cancer therapies is another common concern. 14, 15 The controversies surrounding CAM use contribute to increased levels of conflict and anxiety for patients who contemplate using these therapies as part of their cancer care. 12,16 For this reason, researchers have begun to explore how and in what context patients with cancer make decisions about CAM use, primarily in an effort to design supportive interventions. Many different perspectives have been explored, including those of people with a range of cancer types, [16][17][18] those who have declined standard care, 19,20 and those who identify with a specific ethnic group. 21,22 It has become clear that CAM-related decision-making by patients with cancer (hereafter referred to as "CAM and cancer decision-making") is a complex, dynamic, nonlinear, and highly individualized process. To design evidenceinformed decision-support strategies, a better understanding is needed not only of how the decisionmaking process related to use of CAM unfolds during the cancer trajectory but also of the relevant concepts and relationships.
The purpose of this study was to review the research literature regarding CAM-related decision-making by patients with cancer within the context of treatment, survivorship, and palliation. Specifically, we were interested in the process, context, and outcomes of CAM decision-making and how this decision-making process relates to that associated with conventional medical treatments. We aimed to summarize the literature, to synthesize its critical elements into a preliminary conceptual framework, and to make recommendations for future research.

Methods
We conducted an integrative literature review 23

Emerging concepts in the CAM and cancer decisionmaking literature
Seven unique concepts related to CAM and cancer decision-making emerged through our analysis: decision-making phases, information-seeking and evaluation, decision-making roles, beliefs, contextual factors, decision-making outcomes, and the relationship between CAM and conventional medical decision-making. Table 2 provides a guide to which articles included data relevant to each concept, and the results for each category are briefly synthesized below.
Decision-making phases. The studies included in our review illustrate that CAM-related decision-making does not happen at any finite point in time but rather occurs as a nonlinear, complex, dynamic process, of which therapy choices are one outcome. 18,29,33 Although each person follows his or her own unique CAM Descriptive data and results of the included studies were extracted from each article by one reviewer (L.W.). Descriptive data included such items as first author, article title, research purpose, sample size, and study design. In addition, the reviewer extracted verbatim result statements from each of the included studies. A quality assessment was not conducted, as such an assessment is outside the scope of an integrative literature review. Descriptive data were analyzed by calculating frequencies for relevant categories within each variable. Result statements were analyzed through an iterative process, with the goal of identifying distinct concepts relevant to CAM decision-making. The reviewer began by reading each article to ensure a comprehensive understanding of the content. Next, the reviewer extracted individual result statements and grouped them within Altas.ti qualitative software according to unique concepts within CAM decisionmaking that the statements represented. As each result statement was extracted, it was compared with all previously extracted statements, so that it could be grouped with similar statements or placed into a new category. Each category was labelled with a term to describe a concept within CAM decision-making that the statements in the category represented. Labels were emergent, based on careful reading of the data and regular team discussions, and were not necessarily borrowed from the reviewed articles, to avoid privileging any particular perspective from the existing literature. In the course of this analysis, a set of 7 unique analytic categories emerged. The final step was to synthesize the result statements within each category and propose a preliminary conceptual framework. One reviewer conducted the majority of the analysis; however, regular teleconferences and email discussions with the research team helped to confer authenticity within the emerging analytic categories.
The predefined review protocol is available from the corresponding author upon request.

Results
We identified 425 articles by searching the electronic databases and scanning reference lists. Of these, 35 articles 6,12,17-22,25-51 met our criteria and were included in the review (Figure 1).

Descriptive analysis
Over half of the included articles (   Brown et al. 34 To elucidate common themes across 3 studies of women's decisionmaking and to examine the process that women undergo in making an important decision about their health and well-being, including where and how they acquire the necessary information to make a decision, the factors that infl uence their decision, who supports them in the decision-making process, and how they reconcile confusing or confl icting information * Bricolage was described in this paper as the active process in which people engage to construct their unique understanding of CAM, by piecing together ideas that fi t with their needs and experiences from diverse practices and models of care. decision-making process, we identified 3 specific phases (which we labelled early, mid, and late) that correspond to different events across the cancer trajectory, involving different aims and patterns of information-seeking and evaluation. 42 The early phase of CAM decision-making begins with the initial diagnosis or a recurrence of cancer. 18,28,37 It is characterized by feelings of fear and a sense of loss of control. 28 A wide range of CAM therapies are typically contemplated 12 during this phase, and the process involves seeking and evaluating information regarding the pros and cons of each therapy and reaching a decision regarding whether or not to use CAM, and if so, which type. 12,29,34,35 Some people seem to move through this phase quickly and to spend little time, if any, researching CAM options. 18 Those with past CAM experience seem to fall into this category, as they tend to be less overwhelmed with the amount of available and conflicting information. 18,46 Others spend more time consulting a range of information sources to help evaluate the potential of CAM use. 29 The mid phase is best viewed as a maintenance phase, with the aim being to develop a personalized regimen of CAM therapies that fits within the individual's beliefs and needs. Patients seem to transition to this phase of decision-making when they encounter some sort of positive change in their personal context, for example, once they have adapted psychologically to their cancer diagnosis or completed their conventional cancer treatment. CAM therapies used during this phase are directed toward maintaining well-being, controlling the spread of cancer cells, managing the side effects of treatment, boosting the immune system, and preventing or delaying recurrence. 18,47 The late phase of decision-making includes the same iterative information-gathering and evaluation apparent during the early phase, but there is less urgency, a stronger awareness of CAM, and more comfort with a variety of information sources. 12 People seem to transition to this late phase when their conventional treatment ends and they move into survivorship or palliative care. 12,37 During the late phase, patients consider CAM therapies that help to address a variety of aims, including overcoming a sense of loss and abandonment after discharge, maintaining health, prolonging life, or coming to terms with impending death. 37 In palliative situations, the patient may re-evaluate CAM regimens that were previously perceived to require too much time, money, and effort. 32 Table 2 Concepts related to decision-making in the context of complementary and alternative medicine and cancer described in articles included in the review Transitioning between phases seems to correspond to times of crisis or change within the cancer experience 42 that modify perceived consequences or expectations of CAM therapies within cancer treatment. 45 Such changes seem to motivate people to revisit their original CAM-related decisions and to renew the process of gathering and evaluating information to help adapt to a new circumstance. 12,18,37,38 This transitioning does not appear to represent desperation on the part of patients but, instead, a reasoned approach to critically examining their situation and available options. 33 Information-seeking and evaluation. Informationseeking and evaluation are integral components of decision-making, with distinct patterns during each phase. For some people, these activities form a process that begins at diagnosis and continues throughout their cancer journey. Other people begin to seek and evaluate information when they transition between decision-making phases and need to revisit their CAM decisions. People tend to rely on a wide range of information sources, including books, the Internet, mass media, CAM and conventional practitioners, friends and family, and other cancer patients. 12,17,18,20,29,35,36,37,49,51 Preferred information sources differ depending on the decisionmaking phase, with the broadest range of information sources used in early-phase decision-making, when individuals are exploring their treatment options and learning what types of CAM are available. In subsequent phases, individuals tend to rely on personal experience and the results of medical tests to evaluate whether CAM is helping them to achieve their treatment goals. 20,35,49,50,51 The process of evaluating information has largely been studied by examining the meaning of evidence when cancer patients make CAM-related decisions. It is clear from our review of this literature that what constitutes high-quality evidence for the safety and effectiveness of CAM varies greatly among individuals 46 and also diverges from the standard applied within evidence-based medicine. 12,36,45,51 The type and source of information that individuals accept as evidence seem to depend mostly on underlying beliefs and values, perceived credibility of information, experience with CAM, and stage of disease. 18,29,31,[36][37][38]46 Anxiety, ethnicity, and social support may also play a role. 12,18,40 Within CAM decision-making, information evaluation will play a stronger or weaker role, depending on the level of attention that the individual affords to a given content area and his or her beliefs regarding the potential for use of CAM to modify his or her condition. 45 For example, if someone feels strongly that using herbal medicine can help mitigate the side effects of cancer treatment, and side effects are a great concern for that person, information evaluation becomes an important part of the decision-making process; however, if side effects are not as important an issue for the patient, then information evaluation in this situation is less important.

Reference
Decision-making roles. Individuals tend to take either an active or a passive role in decision-making, and the role they choose may differ at different points during the decision-making process. 12,26,29,36,39,42,45 People who take an active role appear more self-motivated, 42 have more self-confidence, 12 and are more likely to have used CAM before their cancer diagnosis 36,46 than those who take a passive role. The more active group also embraces a wider range of CAM therapies than the more passive group. 36 Taking an active or passive role is associated with cancer type and state of illness: those with rare forms of cancer, faster-growing tumours, or advanced disease are more likely to take an active role. 36 Regardless of whether their role is active or passive, patients with cancer appear to experience CAM decision-making as problematic. Taking an active role often requires going against the socially sanctioned expertise of medical doctors and assuming responsibility for one's own decisions, whereas taking a passive role conflicts with the ideal of individual responsibility for health. 26 Beliefs. A range of beliefs influence CAM and cancer decision-making, including beliefs about the causes of cancer, 17,19,49,50 treatment mechanisms, 20,37,50 risks and benefits of CAM use, 6,12,17,19,20,22,25,28,29,34,35,42,43,46,[49][50][51] risks and benefits of conventional care, 6,[17][18][19][20]28,35,38,42,43,46,[49][50][51] available evidence, 18,19,31 and disease status. 12,18,42,43,45 Although it is possible to categorize beliefs in this way, it is more likely that an individual's entire belief system influences the CAM decisionmaking process, such that decisions are generally congruent with the complexity of the belief system. Depending on an individual's particular context at any given time, he or she will prioritize some beliefs over others when making decisions. For example, during active treatment, patients may prioritize their beliefs about treatment mechanisms and risks and benefits of care over their beliefs about the causes of their cancer.
It is clear, however, that not every person with cancer is explicitly aware of his or her beliefs; furthermore, these beliefs are not static. Current beliefs are informed by a range of factors, including past experiences of the individual 28 or his or her significant others, 22 ethnocultural values, 35,40 faith in God, 22,42 and education. 40 Contextual factors. Several contextual factors influence the experience of making CAM decisions, including demographic and disease-related factors, social factors, and cultural norms. Relevant demographic and disease-related factors include age, 33,47 geography, 29,47 disease status and active treatment, 12,28,33,38,46 experience with CAM use, 19,28,35,38,49 and income and ability to pay. 21,29,35,38,47 Social factors centre on an individual's interactions with others, including friends and family, health care practitioners, and other patients. Finding validation and support from others appears to be of great value to patients and seems to offer them the confidence to move forward with decisions that feel right for them. 12,17,19,30,34,35,44 In some cases, however, support and recommendations from members of a support network can result in feelings of pressure and uncertainty. 35,44 Cultural norms have a strong influence on decision-making and appear to reflect a conflict between CAM and biomedicine, 12,33 the limits of biomedicine, 6,17,28,29,[35][36][37] and perceived harmlessness of many CAM therapies. 28,29 Decision-making outcomes. The CAM decision-making process contributes to a range of outcomes, including the decision to use or not use CAM, but also several others. The process of making a decision has been documented to empower individuals through more active participation in their own care, 49 which can increase a person's sense of control and thus reduce anxiety and fear. 12,18,19,30,37,42,44,50,51 CAM decision-making also introduces individuals to different philosophies of healing, healthy lifestyle behaviours, and personal development. 46 However, making decisions about CAM may also be associated with certain difficulties. For example, common outcomes of CAM decision-making include conflict and resistance from clinicians, both of which can contribute to feelings of frustration and anxiety about making the "right" decision. 12,30,31 Furthermore, individuals may describe feeling uncomfortable with the added responsibility and self-accountability that use of CAM can bring. 26,32,34 Relationship between CAM and conventional medical decision-making. Making decisions about CAM cannot be separated from making decisions about conventional medicine. 6,28,34 These may seem to be similar processes that occur concurrently 46 ; however, depending on the situation, one or the other will take priority. 18 Furthermore, the goals of both decision-making processes appear to be the same, but an individual's beliefs and values will lead to a choice of either CAM or conventional treatment (or both) to achieve his or her treatment goals. 6

Synthesis
An emergent conceptual framework illustrating the relationship among the 7 central concepts is presented in Figure 2. In this framework, CAM decisionmaking begins with the diagnosis of cancer. The process encompasses 3 distinct phases, each marked by unique patterns of information-seeking and evaluation, specifically, early-, mid-, and late-phase decision-making. Transitions between phases correspond to changes in health status, a crisis, or other milestones within the cancer trajectory. All decision-making phases are influenced by a myriad of contextual factors, including demographic and disease-related factors, social factors, cultural norms, and personal beliefs about cancer, its causes, and its treatments. Outcomes of the decision-making process include one or possibly multiple CAM decisions over time, and also shifts in perceived sense of control, empowerment, anxiety, and fear, as well as conflict over whether the "right" decision has been made.

Interpretation
Through this integrative literature review, we have created a conceptual framework for CAM and cancer decision-making that can be used to guide the development of decision-support programs as well as future research in this field. The inclusion of diverse studies representing diverse populations ensures that the framework is comprehensive and therefore broadly applicable to cancer patients who are contemplating treatment options. It illustrates 3 distinct phases within CAM and cancer decision-making, each characterized by different patterns of information-seeking and evaluation. It is also clear that CAM decision-making should not be considered as a process separate from decision-making related to conventional medical care.
Beliefs, values, and other social and cultural norms guide all treatment choices, and some patients will require support to articulate and prioritize these factors when making treatment decisions.
The inclusion of diverse study designs within integrative literature reviews means that such reviews are more susceptible to lack of rigour than are other types of reviews (such as systematic reviews). 24 For example, although our search was extensive, it is possible that we missed some primary studies, especially any published in languages other than English. However, given that we searched multiple databases and scanned reference lists of included articles for additional eligible studies, it is likely that we identified most of the published literature in this field. Furthermore, the reliability of our sampling strategy was enhanced by using prespecified inclusion and exclusion criteria and by having 2 reviewers screen each potentially relevant article. Data extraction within integrative literature reviews can be especially problematic because of the wide range of variables, theories, and populations examined within diverse primary studies. To provide focus and delineate boundaries for the review, our team met frequently to formulate a clear research purpose and related data-extraction strategy, as well as to discuss the analysis as it was emerging. 24 Finally, our data analysis strategy was compatible with strategies used to combine diverse data within mixed-methods studies, 52 further supporting the rigour of our review.
We expect that the results of this review, including the conceptual framework and descriptions of relevant concepts within CAM and cancer decision-making, will be instructive for health care professionals who are supporting patients moving through this complex process. Decisions about CAM use are often characterized by conflict and anxiety, 12,16 perhaps more so in the setting of cancer than other diseases, given the cultural significance of a cancer diagnosis. 53 Decision-support programs are needed to promote open dialogue about the use of CAM in cancer care, to direct patients to high-quality information resources, and to support the safe integration of CAM within standard care. 54 This study has helped to identify some key characteristics required of such decision-support programs. Of note, these programs should encompass a variety of strategies to support patients within different decisionmaking phases. They must also acknowledge the variability and complexity of individuals' personal contexts, including beliefs, values, and social roles, which will influence when and how people make treatment decisions. Decision-support programs must also be flexible and adaptive, to account for both active and passive

Figure 2
Conceptual framework of the decision-making process for complementary and alternative medicine (CAM) by patients with cancer. Conventional medical-decision making is included in this framework because making decisions about CAM cannot be separated from making decisions about conventional medicine. Social factors, cultural norms, and demographic and disease-related factors constitute the "contextual factors" discussed in the text. Transitions from one phase to another within the decision-making trajectory may occur at times of crisis or milestones, such as the end of conventional treatment and transition to survivorship or palliative care.
decision-making roles, diversity in preferred information sources, and changing needs and goals throughout the cancer experience. Finally, given that CAM-related decisions are intertwined with decision-making related to conventional medical treatments, it seems reasonable that CAM decision-support programs should be integrated with other programs offered within standard care.
To date, most of the research in the field of CAM and cancer decision-making has been conceptual and exploratory. This perspective has been crucial to gaining a better understanding of the complexity within CAM decision-making. The integrative review presented here provides a comprehensive understanding of the CAM and cancer decision-making process, including the distinct decision-making phases, roles, and contextual influences. It is now time to move forward with the development and evaluation of theory-based decision-support programs to provide evidenceinformed support for cancer patients in making decisions about CAM and conventional medical treatment. The proposed conceptual framework is a guide to ensure that decision-support programs are responsive to patients' beliefs and preferences and appropriate to their unique needs at different points throughout the cancer trajectory.
Contributors: Lynda Balneaves, Charlotte Paterson and Marja Verhoef conceived the project and, collectively with Laura Weeks, finalized the study methodology. Laura Weeks conducted the database search, and all authors helped to screen studies for inclusion in the review. Laura Weeks collected the data and led the data analysis, with regular input through team meetings with Lynda Balneaves, Charlotte Paterson and Marja Verhoef. Laura Weeks wrote the first draft of this manuscript, and Lynda Balneaves, Charlotte Paterson and Marja Verhoef reviewed and edited a series of manuscript drafts. Marja Verhoef is the guarantor and maintains responsibility for the integrity of the work. All of the authors approved the final version of this manuscript